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The Neurologist Visit -- January 29, 2003

We had a visit with the neurologist today. Interesting fellow. He seems to have a lot of hope for Sam's cognitive development given the enriching family life he suspects David and I can provide. But his encouraging words regarding this matter were followed today by the discouraging statement: "If he can survive infancy."

Yep, the neurologist believes that Sam is an "urp and a burp" away from death. Kind of a crude way of putting it if you ask me, but true nonetheless. When you've got a baby who's brain fails to send a signal to breathe, it's clear you're not dealing with a healthy, stable infant. Still, the neurologist's philosophy on child-rearing seems to run parallel to ours. We all realize that Sam's chance for physical survival might be slightly better in a hospital and, yet, a hospital is no place for a child to thrive developmentally. So we go through each day with the knowledge that Sam's next apnea event or "blue baby" episode may be his last. And at least once a day I mentally go over the steps to resuscitate an infant. "Lay baby on his back, open airway, place your mouth over baby's nose and mouth, give two small rescue breaths...."

had i not crested each wave of labor to your glorious
emergence
had i not been there for your debut
i would have thought you were dropped from heaven
your body damaged in the fall
but your spirit whole — big, beautiful and pure

never imagining my love to be so complete and selfless
not expecting my fierce desire to make your little body able
and perfect
or my fear to change anything
lest my meddling somehow diminish your beauty